Support for the cancer patient

Parent Cafe
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DH’s Decipher results are back – .11 is well below top of the range for “low risk” of aggressive spread (top of the range is .45 on a 0-1 scale)

That means he will be choosing between surgery and non-hormone 5 course of proton SBRT radiation. He sees the downside of surgery as permanent incontinence risk; the SBRT thing that worries him is the chance of causing cancer later on, since he’s only 62 right now. I am trying to think of this as “invasive procedure with some potential for permanent damage” vs “noninvasive procedure with nearly no permanent side effects”. Thank you again to whoever it was upthread who linked to the ProTect study, he’s reading it multiple times. If nothing else, it makes clear that the tests, etc., can’t really tell you everything. We are accepting that recurrence is probably in our future.

He has said he doesn’t want to get cancer 10 years from now and think “damn, I chose the wrong one”. I feel like I am not really helpful at this point, we go back to the surgeon next week. The process here has been so stupid, we’ve spent so much time waiting when these Decipher results could have been back more than a month ago. I hope the surgeon won’t send us back to oncology now that they can be more specific about radiation.

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102

I’m so sorry that it’s not a clear cut decision. I would find that extremely difficult.

Has your H asked his team what they would do for themselves if faced with the same choice?

Big hugs!

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We have, and they say “there are no wrong choices”. I think DH was faux-hoping the Decipher test would show something aggressive and I punched him in the arm for that – we are not hoping that it’s a worse case because it makes choosing easier, lol. In 2026 USA, it is just appropriate to be feeling blessed we have doctors, coverage, and a good hospital, and time to decide.

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I’m glad to hear the news that his tumor is low risk.

I would not characterize radiation/SBRT like this. There are long term side effects in many men, including nocturia, fecal incontinence, ED. Here are the patient reported outcomes from the Protect trial, 12 years post-study randomization. https://evidence.nejm.org/doi/full/10.1056/EVIDoa2300018

I think I said upthread somewhere that most men who have the choice of surgery or radiation choose based on which side effect profile/risk they would prefer/be best able to tolerate. The choice for many comes down to the side effects because the survival rates are so similar.

I will note that the Protect trial radiation therapy was not SBRT, so your H would be having a shorter treatment course with SBRT. He should ask his doc if they expect the side effects to be similar to what the Protect trial radiation arm. (some docs do believe the fecal incontinence will be lower with SBRT, for example)

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Yes, I am aware the trial was not SBRT, which probably makes a difference. DH did ask the oncologist about side effects and the doctor literally waved his hand and said “there are none to speak of worth worrying about”. We know that’s not accurate, but at the time, we’d already been told there would be no discussion of specifics until the decipher test was back, so pressing the doctor seemed exhausting after all the rest. The doctor sees many men who are much sicker, and much older, and I think that is not helping his bedside manner.

We also got his PSA, done that day, back. In 4 months it has gone up another point, which is part of why DH was thinking perhaps he had a more aggressive form. I can’t seem to convince him the PSA is not a terribly indicative predictor, just a screening tool. He’s pretty stressed in general, and we had things we needed to do this spring and aren’t able to even make a Plan B at this point. Sorry to monopolize the thread. I feel like he wants me to choose, and make his choosing easier, but I already told him I can’t make this decision since I am not the one living with the outcome.

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For sure, but PSA is all we have. Plenty of men who are in active surveillance and having annual or twice annual PSA checks even go in the normal range here and there.

It is stressful. Having a cancer diagnosis (even a ‘good’ one) and looking at treatments that are highly likely to impact one’s quality of life in the short term, and maybe over the long term, is understandable.

This approach makes sense to me. Hugs to you. Does he know any prostate cancer patients who have already been treated that he can talk with and/or attend a patient support group? Maybe that would help him get more clarity? Is he seeing the med onc again, who ostensibly should be the one helping in weigh pros/cons and making the choice?

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His job is stressful anyway, and of course this is not helpful. He does know other men who are doing or have done this (and I read him pertinent posts from here). We don’t have the sort of medical professional y’all have recommended; the oncology dept does have a cancer concierge but that was described as helping us navigate payment programs, insurance, and social work (and other patients we know have said it was not helpful so we passed on it).

His dad has been muddying the water with his own experiences 30 years ago. I’m sure DH will come to a conclusion soon, and just needs time and space to do it. I myself don’t care what he does as long as it gives him some peace of mind. He’s a pretty tough cookie, doesn’t give himself enough credit that way.

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Perhaps it’s time to request a referral to a major teaching hospital for a second opinion? At this point all the testing has been done so you’re just looking for their expertise and experience. The doctor’s ‘hand-waving’ of side effects is, frankly, a form of medical gaslighting. Dismissing legitimate concerns about quality of life as ‘not worth worrying about’ is a red flag —especially now that you have the Decipher results and are facing concrete treatment decisions.

It sounds like your husband just wants to have this over with, which I completely understand—the mental weight of cancer testing and the pressure of choosing a treatment is exhausting. However, you both deserve an oncologist who treats ‘quality of life’ as a priority, not an afterthought. A single day spent at a major teaching hospital for a second opinion could provide the clarity and respect you aren’t getting locally, even if you choose to have the actual treatment done close to home.

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I got 4 opinions for my breast cancer treatment- all at teaching hospitals. These decisions can be complex. I would get a second opinion and keep going until he feels comfortable and sure.

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That makes sense except he has zero interest in more opinion. RIght now, he seems to just be in decision paralysis/denial…he’s avoiding deciding and I am attempting to be patient. I understand that deciding represents a reality different from going to appointments, but dude. There’s no way through but through. WIthout asking me, he cancelled the return appointment with the oncologist because he thought there would be no new info, even though the appt is to go over radiation therapy now that the Decipher test is back. (I have since basically insisted he message the office and ask for that appointment to be rescheduled.) He still has a urology/surgical appt this week.

His dad is now full of “questions” that all sound like “but are you okay with all the damage surgery will do?” or “do you prefer the bleeding after surgery to the small risks of radiation?” . DH knows these are false presumptions, but now his father’s voice is in his head. Sigh. I just want to put my head down today. It’s not socially acceptable to be exasperated with a cancer patient so thanks for listening to me vent !

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At least to me, actually going ahead with treatment was a huge relief.

First they tell you that you have cancer, and you think that life is over. They you hear about treatment options. You pick a treatment plan. They might run additional tests. All of this is stressful. Then at least in my case I went in for (robot-assisted) surgery.

I still remember waking up after surgery. The first thing that went through my head was “it is over, I feel fine, and I am still here”. It was a huge relief. I was walking a little bit in a few hours. At first after surgery I was on opiates and therefore could not drive. However, it was less than a week after surgery when my wife drove me to a farmer’s market and I was able to just walk around completely normally and purchase fruit and vegetables. It might be hard for anyone who has not gone through this to realize how much of a relief it is to just walk around in public and be normal (I think this was 4 or 5 days after surgery). Then as soon as I was allowed to take ibuprofen I went off opiates with no problems at all. One single ibuprofen two or three times a day was plenty. Any pain really was never a problem.

The treatment was a whole lot less of a problem compared to the worry before being treated.

Then after a year or two we realized that the cancer was back. After a few more years of waiting (it turned out to be way slower than the original expectation) it finally got to the point where they could find and treat one single metastasis and take it out with radiation. The treatment was again a great relief. It was also quick and painless. You lie down for a few minutes. A machine whirls around you. You feel nothing. Then you drive home. The only downside was that I got tired a few hours after treatments. Okay, so I took naps. A nap once per day for a couple of weeks is a pretty mild side effect. A year later I repeated this for another recurrence. Then my cancer became undetectable (at least for now).

So the treatments were actually pretty easy. They might have been the easiest part of the process. But you have to get there.

Personally I would do whatever the oncologist recommends.

I do think that a few weeks of waiting is likely to be harmless. Prostate cancer is usually slow. However, at some point you have to make a decision and go with a treatment. Actually getting the treatment can be a relatively painless process, and a huge relief.

I never noticed any bleeding at all after surgery. The incisions with robot-assisted surgery are really quite small and heal quickly. The side effects are also quite mild. Okay, I won’t have any more children. At an age in my 60’s with a spouse in her 60’s having more children really did not seem likely in any case (we are in our 70’s now). We are very happy with the children that we already have. Shoveling snow, biking, skiing, playing piano, playing chess, all of this works just fine (or at least as well as it did before the treatments – actually my chess may be a bit stronger now).

There is life after cancer. There are millions of Americans walking around proving this. I am one of them.

And our doctors really have gotten very good at helping us patients to continue to have normal lives while being treated and after being treated for cancer.

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@greenbuttton I am in a similar situation with a close friend with a terminal glioblastoma whose main proxy is a professor at medical school but so indecisive, passive, paralyzed, in denial etc. I work hard ( as 2nd Proxy) to set up plans and she finds an obstacle to complicate things. I totally get the frustration. Any chance he can delegate so you can take over to some extent, as, let’s say, his assistant?

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Understood. His father has certain perceptions that do not reflect the reality of treatment, but nevertheless persists in bringing them up as concerns, because HE is concerned. DH has never been very good at ignoring his dad, and that’s fine. But it’s so not helpful to bring up things that aren’t going to happen. DH knows he will be fine, I think he’s just wishing one option was a million times better, so deciding would be easier. He has worked his whole life in a field where you have to be sure, and you have to be right, or really bad things might happen. I’m confident he’ll get to a comfort level, but I might shake him first, lol.

I’ll read him your post, thank you. He finds “real life” accounts extremely helpful.

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An update :

We had our appointment today, and the urologist was completely in concurrence w DHs decision to have surgery rather than SBRT radiation. I am good with that as well. He had a choice of surgery in 2 weeks, or the very end of May and he/we picked end of May because it allows us to cover some family obligations we were hoping to fulfill, without pressuring him to recover in a specific timeframe and he has time to get things at work prepared. June and July we have nothing at all planned anyway.

@DadTwoGirls he was clearly relieved to have a decision and a date and a plan. I read him your posts and it seemed to confirm many things he was thinking. They gave us a pile of pre-op work and suggestions for exercises in the meantime.

I honestly don’t know what I’d do without everyone being so kind and offering input. It really was appreciated.

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I’m glad your H has come to a decision. This is such a hard process. My H is having surgery next week, so we’re a little ahead of you. He’s been doing the exercises and other prep assiduously.

He took the first available date offered. He’s not good at waiting around at all.

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Mine is doing exercises too! I think they are glad to have the work.

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I am not sure if you two are talking about specific exercises, but in general, to prepare for my surgery in February I made sure to get more exercise and increase my strength and general fitness, and I believe that it has made a really big difference in my recovery. Good luck, I hope everything goes well :heart:

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Specifically, kegels, but overall, exercise in general for sure.

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Yay, H is finally recovering from his prostate cancer treatments (beam radiation, brachytherapy and hormone suppression). His PSA number remains low (0.02 to now 0.05) but his testosterone level went from undetectable (when he was taking hormone suppression) to now “normal,” of low 300s! He’s also waking only once or twice a night now instead of every hour!

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I am not a doctor and do not fully understand the medical issues. I am a patient who had some similar experiences.

My understanding is that the testosterone suppression can also impact the PSA, so that a rebound from 0.02 to 0.05 (which is still VERY low, which is good) might just be because the testosterone recovered, or because of randomness in the tests.

To me it sounds like things are going great, and your husband is in the state where the cancer might be gone, or might not. This is a rather normal state for a cancer patient. With a type of cancer that is typically slow, it might be years before your husband and you know whether the cancer is gone or not.

One important thing to keep in mind: The doctors still have lots of approaches that they can use if they need to. If the cancer comes back again, there are lots of things that they can do to treat it again.

Best wishes.

This is a process. In mean time we live our lives and take advantage of every day that we have in this world.

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